Kari Luther Rosbeck | President & Chief Executive Officer
Kari joined the TS Alliance in June 2001 and became President and CEO in November 2007. She is responsible for the overall management and administration of the organization. This includes strategic planning, implementation of organizational strategies and evaluation of results, in conjunction with the board of directors, to ensure the organization meets its mission to find a cure for tuberous sclerosis complex (TSC) while improving the lives of those affected. Kari has been involved in nonprofit fundraising and volunteer management for more than 25 years. During Kari’s tenure as President and CEO, the TS Alliance established a comprehensive research program fostering collaboration with industry and academia to move treatments for TSC forward in a more expedited way. The “Unlock the Cure” research strategy focuses on key points along the drug discovery path: TS Alliance Grants Program promoting young investigators; Drug Screening by establishing a Preclinical Consortium; Clinical Research Consortium expediting implementation of future clinical trials and recruiting for clinical studies; biomarkers identification; and the TSC Natural History Database expansion including a Biosample Repository. “Unlock the Cure” also serves as a capital fundraising campaign, raising more than $7.8 million for TSC research since August 2011. Because of her leadership, the organization has taken an active role in educating the TSC community about clinical trials to diminish the time for recruitment. In the past seven years, there have been FDA approvals for two therapies to combat infantile spasms, the most catastrophic form of epilepsy that up to a third of infants with TSC may experience, and two approvals of a drug with a TSC indication, specifically SEGA and AMLs associated with TSC. Kari previously served as Executive Vice President, overseeing the national volunteer outreach program and was responsible for fund development. She developed and implemented a vast national network of more than 30 volunteer branches called Community Alliances; increased volunteer participation from 90 individuals to more than 2,000; and through her involvement in special events and major gift fundraising, helped increase the annual revenue by more than 50 percent. Kari graduated with a BA degree in Theatre from the State University of New York at Albany and upon graduation founded a theatre company with fellow graduates in New York, NY. After the loss of her first child, Noell, to sudden infant death, she dedicated her career to helping other families. Kari is the proud mother of four sons and grateful to her husband Chris for his unending support. When not working, she enjoys traveling with her family, playing golf and being an avid Minnesota Vikings fan. Read Kari’s Profile in Success.
Richard Gollub, CPA | Controller & Chief Financial Officer
Rich serves as the Controller and Chief Financial Officer of the TS Alliance. Licensed as a CPA in the District of Columbia, Rich has held varied accounting and financial roles over 25 years. After beginning his accounting career in public accounting, Rich worked for a real estate developer and then, over the past 15 years, he led the finance departments of non-profit organizations, most recently serving as the Chief Financial Officer of the Children’s Defense Fund, prior to joining the TS Alliance in March 2015. With an undergraduate degree in elementary education from the University of Pittsburgh, he held positions teaching and working as a carpenter before completing his Master of Accountancy degree program at the George Washington University and joining the world of accounting and finance. Born and bred in Philadelphia, he enjoys biking, winning at ping pong, and living in Silver Spring, MD with his wife Jill, his dog Keiko, and when they are not attending college, with his children, Victor and Rebecca.
Steven L. Roberds, PhD | Chief Scientific Officer
Steve joined the TS Alliance staff in 2011 as Chief Scientific Officer. In this role, Steve leads the development and execution of the TS Alliance’s research strategy through partnerships and conversations with all stakeholders, including individuals and families affected by TSC, basic and clinical researchers, healthcare providers, government agencies involved in medical research, and other non-profit organizations. In 2012, Steve led the implementation of the first TSC Clinical Consensus Conference since 1998. In 2015, he worked with program officers at the National Institutes of Health to design and carry out a workshop to update the TSC research strategy for the next ten years. To move this updated strategy forward, Steve drove the creation of two TS Alliance-led collaborative projects: the TSC Preclinical Consortium to accelerate testing of potential new treatments and the TSC Biosample Repository to collect and share biosamples from individuals enrolled in the TSC Natural History Database. Steve was awarded his PhD in Pharmacology from Vanderbilt University in 1992, after which he was introduced to rare disease research as a postdoctoral fellow at the University of Iowa studying the biology and genetics of muscular dystrophies. He then began a 16-year research career in the pharmaceutical industry. Immediately prior to joining the TS Alliance, Steve was an Associate Research Fellow and project leader responsible for driving global project teams toward new human proof-of-concept studies to repurpose Pfizer compounds for new indications. Steve has three grown children and loves exploring all the history, food, and music the Washington, DC area has to offer with his wife Mary.
Christen Bell | Conference Manager
Christen joined the TS Alliance in September 2012 as Community Outreach Manager; in September 2017, she was named Conference Manager and will direct all planning for the 2018 World TSC Conference. As Community Outreach Manager, her primary responsibilities included managing 37 local TS Alliance branches, called Community Alliances; organizing regional and world conferences; and assisting with government relations and outreach programs. Christen also served as the staff planning lead for the 2014 World TSC Conference in Washington, DC, which attracted more than 600 participants from 31 countries, and she’s been instrumental in bolstering the Community Alliance and volunteer programs. Christen earned her BA in Public Relations and Spanish from Penn State University in 2009; in 2015, Christen and her family returned to the State College, PA area where she works remotely for the TS Alliance. Her free time is spent with her growing family, training for marathons, and the occasional luxury of reading a good book.
Tori Bonn | Administrative Assistant
Tori joined the TS Alliance in September 2017 as the Administrative Assistant. Tori manages the reception area at the TS Alliance office and is the first point of contact for callers and visitors. She handles the distribution of TSC information to volunteers, constituents, and non-members via mail, email, and phone. Tori also assists the special events team with event logistics. Tori earned a BA degree in International Studies and a minor in French and Francophone Studies from the University of Michigan. She also enjoys traveling reading in her free time.
Dani Brunner, PhD | Senior Scientific Advisor / Preclinical Research Leader
Dani is Founder and President of the Early Signal Foundation and Preclinical Research Leader at the Tuberous Sclerosis Alliance. Dr. Brunner has worked on the validation of models of developmental, psychiatric and neurodegenerative disease models for the last 20 years. A major focus of her work has been the establishment and automatization of rodent behavioral tests and novel high throughput preclinical platforms using computer vision and machine learning algorithms to comb behavioral signatures for phenotyping, drug screening and systems biology approaches. As Senior Vice-President of Behavioral R&D at PsychoGenics, she was in charge of large projects focused on back-translation of anti-smoking cessation medication, preclinical cognitive assessment, and studies in neurodegeneration, psychiatry, and autism. As head of the Early Signal Foundation, Dr. Brunner aims to establish analytical systems that integrate human behavioral and “omics” readouts for health care and monitoring in rare disorders, connecting genomic information with behavioral domains, especially those passively captured with wearable sensors. As leader of the preclinical work at the Tuberous Sclerosis Alliance, Dr. Brunner is setting up a large consortium of industrial and academic institutions and experts, to accelerate the development of therapeutics for this devastating disorder.
April Cooper | Director, Community Programs
April joined the TS Alliance in January 2017. She brings 17 years of community experience having chaired the TS Alliance of Orange County and Southern California, helping found the Orange County Golf Tournament, serving on the Comedy for a Cure planning committee since its inception, leading the Southern California Regional TSC Conference and helping to open the first TSC Clinic west of the Mississippi. April received one of the inaugural Volunteer of the Year awards in 2005. She has twin daughters, Abigail and Amelia, with TSC and most recently served on the TS Alliance Board of Directors. Professionally, April spent 28 years in commercial real estate, which concluded with 18 years at GE Capital.
Emebet Gmichael | Senior Accountant
Emebet joined the TS Alliance in May 2017 as a Senior Accountant. She previously worked in various management positions for Cineplex Odeon, Loews and AMC Theatres for 22 years in Washington, DC and Maryland locations while putting herself through college. After attending Montgomery College and the University of Maryland, she earned her Bachelor’s Degree in Accounting in 2002. Following graduation, Emebet worked for 13 years as Accounting Manager for the Association for Childhood Education International (ACEI).
Calvin Ho, CPhil | Science Project Coordinator
Calvin joined the TS Alliance in 2017 as Science Project Coordinator. He supports collaborations with external scientists, tracks the growth of the organization’s investments in TSC research, and communicates research results and opportunities to the scientific community. Calvin comes to the TS Alliance from UCLA, where he mentored students of color who were pursuing research careers in the humanities and social sciences.
Tyler Hoffman | Database Project Manager
Tyler joined the TS Alliance in 2005 as a Development Assistant and was promoted Database Project Manager in 2014. He has more than 14 years of experience working in various software databases. Tyler manages the Luminate Online and Raiser’s Edge database platforms and handles donation acknowledgements, revenue entry and constituent information. Tyler studied at Syracuse University, but changed his passion and pursued a more meaningful career in human services and humanitarian assistance.
Dena Hook | Vice President, Support Services
Dena has been an educational advocate for more than 25 years. She served as the Technical Assistant Coordinator for the National Parent Training and Information Center (PACER) for over 6 years training educational advocates throughout the country. Dena worked with the Office of Special Education Programs (OSEP) during the reauthorization of the Individuals with Disabilities Education Act in 1997. She is a published author through Incentive Publication authoring “Success with IEPs” and “An IEP Writing Tool” for teachers and school administrators. During her time as CEO of Family and Children First, she ran Part C of the Individuals with Disabilities Education Act Early Childhood Program, Truancy Mediation, and Strengthening Families a Mental Health and Drug Addiction Program for Marion County in Ohio. She is certified as Special Education Mediator through the Juvenile Justice Center of Atlanta and as a Truancy Mediator through the Ohio Supreme Court.
Jaye Isham | Vice President, Communications Strategy
Jaye joined the TS Alliance in 2004 as Director of Communications; he was named Vice President, Communications Strategy in 2013. With more than 25 years of experience in healthcare and nonprofit organizations, Jaye directs the TS Alliance’s expansive communications planning and execution efforts; branding and marketing strategies; evolving communications technology including social networking, videos and interactive media; writing and editing; media relations; and event promotion. During his tenure, the monthly unique visitors to the TS Alliance website have more than doubled, from an average of 17,000 in 2004 to 38,500-42,000 today. In addition, Jaye has been responsible for directing multiple awareness activities including creating the successful “31 Facts for 31 Days” campaign for TSC Awareness Month, which is now used worldwide each May. He was also instrumental in launching the #IAMTSC public service announcement (PSA) and micro website campaign, which garnered media placement values of more than $1.1 million. Jaye earned a BA degree in Mass Communication from Texas State University. He previously held positions with several nonprofits, including Montgomery Hospice Society, Montgomery General Hospital, National Multiple Sclerosis Society Houston Chapter, and Scott & White Clinic/Hospital in Temple, Texas. An avid movie buff, he spends most of his spare time being bossed around by his four mini pinschers, playing guitar and bicycling. He lives in New Mexico with his husband Larry.
Daniel Klein | Manager, Donor Relations
Dan started volunteering at the TS Alliance in 2011 and joined the staff full time in 2012 as Development Associate. He was named Manager of Donor Relations in 2014. As a member of the TS Alliance development team, Dan supports fundraising efforts to promote future growth of the organization. He is responsible for creating, leading and implementing a 360 development communication plan aimed at converting online donors to organizational partners, oversees the TS Alliance grants program and works on expanding general public awareness through social media. Dan earned a BS degree in Journalism from Ohio University. His interests outside of work include playing floor hockey, visiting breweries and traveling the world.
Shelly Meitzler | Regional Program Manager, North
In January 2017, Shelly joined the team on as National Walks Coordinator; in September 2017, she joined the staff full time. Shelly has been involved with the TS Alliance for the past decade, including serving as both Community Alliance Chair and Step Forward to Cure TSC Chair in Delaware/Lehigh Valley. Last year, she delivered an inspirational speech at the TS Alliance Congressional Briefing on Capitol Hill chronicling her journey as a TSC mom to Ashlin and Mason. She is grateful to have an extended, supportive family that has helped navigate the journey of TSC and allowed her to be involved on various levels in the community. Shelly’s story has provided hope as ongoing TSC research has offered new insight over the last decade and solidified her determination to continue to advocate, educate, and raise vital research dollars for all those impacted by TSC. In her free time, she enjoys spending time with family and friends, laughing, enjoying life, and the occasional hockey game with her husband, Matt.
Lisa Moss | Senior Director, Donor Relations
Lisa joined the TS Alliance in July 2012, and and she focuses on fundraising efforts for the organization. Fund development is essential to provide support services and drive research forward, and the development team builds relationships with private, corporate and industry donors while raising valuable resources through corporate sponsorships, grants, appeals, individual gifts, special events and the Step Forward to Cure TSC walks. Lisa and her team raised more than $550,000 to support the 2014 World TSC Conference held in Washington, DC, where families, individuals with TSC, researchers and physicians came together for three days to attend meetings and connect with the TSC community. The “Unlock the Cure” research initiative has raised more than $7.8 million since its inception and is targeted to fund research, advance a drug screening program, develop a clinical research network, identify biomarkers and expand the TSC Natural History Database. Lisa’s introduction to the TS Alliance was in 2006 when her son, Evan, was diagnosed with TSC. The following year she began volunteering by participating in the March on Capitol Hill and attending the DC Food & Wine Tasting event, which marked the beginning of a long-standing relationship with the TS Alliance. From 2008-2012 Lisa served as Co-Chair of the TS Alliance of Metro DC. In 2012, Lisa produced Art for a Cure and the first Step Forward to Cure TSC National Walk on the Mall in DC. In addition to her volunteerism and activism for TSC, Lisa is also involved in the epilepsy community and served on the Board of Directors for the National Epilepsy Foundation. In 2011, Lisa led a marketing and fundraising campaign for 4 Paws for Ability, a 501c3 that trains service dogs for children, resulting in raising the funds necessary for her son’s service dog and several additional children. In 2007 Lisa and her husband, Rob, co-founded SeizureTracker.com, a database-driven website that acts as a comprehensive seizure diary system and free resource to the epilepsy community. Lisa and her family live in Virginia.
Jo Anne Nakagawa | Director, Clinical Projects & TSC Clinic Liaison
Jo Anne joined the TS Alliance staff in August 2005 with 30 years of experience, working in various laboratory and clinical research activities at the University of California Los Angeles (UCLA), where she earned her BA in Biology. Her 30 years at UCLA include 16 years in regulatory management and coordination of pediatric clinical trials and preparation of and oversight of physician-initiated investigational new drug (IND) trials, which included the clinical trial for treatment of newly diagnosed infantile spasms that helped get vigabatrin approved in the United States. At the TS Alliance, she is the administrative project leader of the TSC Natural History Database, which now has more than 2,000 participants due to her leadership, and the TS Alliance TSC Biosample Repository. Jo Anne also serves as the liaison between the organization and the 68 TSC Clinics who have met clinical care standards recommended and approved by the TS Alliance Board of Directors to be recognized as a center that provides care for those affected. She enjoys gardening, working on art projects, watching her favorite TV shows on DVD while on the treadmill, and visiting her three grandchildren in Northern California as much as possible.
Gail Saunders | Senior Regional Program Manager, South
Gail joined the TS Alliance in 2005 as the Office Manager, providing administrative and logistical support for the staff and board of directors. Over the years, her enthusiasm grew for event planning and community support. Gail’s strengths include planning and executing events, and identifying and cultivating relationships to broaden our Step Forward to Cure TSC walk program and other community campaigns. Both as a staff lead on walks and supporting our development department in growing our fundraising efforts, she shares her skills, hoping each day to make a difference. By far her greatest joy and accomplishment is her connection to her family and surpassing the mission to connect as a community, raise awareness of the disease and inspire others to join the fight against TSC.
Julie Scroggins | Regional Program Manager, West
Julie joined the TS Alliance in January 2018 as Regional Program Manager, West. She has been involved with the TS Alliance since her oldest daughter was diagnosed with TSC in 2009. Since then, she has served on the Government Action Team, Science and Medical Committee, Audit Committee and most recently on the Board of Directors. In 2011 she founded Bcureful, a grassroots nonprofit devoted to advancing research toward the cure for TSC as well as raising public awareness of the disorder and helping to bring expert medical care and support to people where they need it. She is proud of everything Bcureful has accomplished to date and looks forward to watching its new leadership continue to grow the organization. Professionally Julie spent 37 years in the automotive industry and earned national recognition for her efforts at marketing to — and elevating the automotive experience for — women. Julie and her husband Dave have three children, Mary Ann, Chris and Mabel. She enjoys spending free time with family and friends and meeting new people.
Katie Smith | Manager, Research & Global Affairs
Katie joined the TS Alliance staff in 2006. She currently oversees the organization’s international outreach efforts, directs government advocacy efforts, supports the research grants process, and has served as the secretary of TSC International for the past 5 years. During her tenure with the TS Alliance, Katie has implemented our Global Alliance program, which currently includes formal partnerships with Israel, Canada, Asia and Hungary.